Today is Young Carers Action Day. They are calling for a Young Carer Lead - a member of staff in every school, college & uni with responsibility for identifying young carers & getting them support they need. Hear from young carers themselves about kind of support that helps. tinyurl.com/5akuzsbu

In spite of how it feels Robert Groysman MD says: "Long COVID brought attn. But ME/CFS pts brought knowledge. The pacing strategies, trigger id. Comm understanding of what post-exertional malaise actually means. You're not an afterthought in this convo. You're foundation of it tinyurl.com/4enxjy5x

OMF explains that Prevalence is a measurement of how many people are currently experiencing a condition. They explain how it is calculated and how it differs from lifetime prevalence tinyurl.com/mr44nc2m

Disability minister Stephen Timms says the DWP have almost cleared backlog of WCA reassessments, where claimant has requested one, & are doing more scheduled reassessments. If yr condition has deteriorated & you need a WCA reassessment ask yr MP's office to write on yr behalf. tinyurl.com/mvp2uwvk

Luis Nacul talks about Considerations and challenges in the provision of care for ME/CFS and Long COVID. [25 mins] + Subtitles +Transcript tinyurl.com/y4vewvd9

An app for young carers in Wales offers: digital identity card; a way to ping your school or college; contact list for support network; useful info; and local discounts are coming soon. Download AiDi and apply online. www.aidi.cymru/en/

MERUK analyses the level of research funding in the UK and finds it lower than for other conditions in spite of the relatively high numbers of people, level of impairment and economic burden. The UK Gov has repeatedly refused to ring-fence funding. tinyurl.com/4e2zkekm

The MEA gives a 3 month update on the Rosetta Stone study which is investigating shared and distinct biological mechanisms in ME/CFS and Long Covid. tinyurl.com/5n8aj368

Access Card is like a disability passport. It shows, in symbols, yr disability/impairment. Participating companies, venues etc can see support u need inc complex reasonable adjustments without having to go into loads of personal detail. Costs £15 for 3yrs. Can be used abroad tinyurl.com/3pw35pnh

DWP disability minister Timms told MPs last week Timms review is only just working out how to involve outside agencies in its work. He also confirmed WCA is definitely being abolished & eligibility for additional health-related financial support in UC will be ax via PIP assmt tinyurl.com/4sjbyk23

MERUK explains how NAKO, Germany’s largest long-term study into widespread diseases enables comparisons of biosamples before, during & after an infection. This is crucial data for ME/CFS & LC as it will allow any immune dysregulation or disease processes to be observed tinyurl.com/yc6462hd

UK charity Designability has launched a major survey calling on 10,000 Disabled people across the UK to take part. The Unfair Index gives Disabled people the chance to share the everyday barriers they face–at home, work, online, in public spaces and in their communities. tinyurl.com/yc444bxa

Caroline Kingdon talks about her research with people with severe ME/CFS in the UK and the challenges they face receiving healthcare. [22 mins] +Transcript tinyurl.com/tytb6kch

WAMES report of a survey of Health Board's services for ME/CFS is now available: A patchwork of progress, regional variations and gaps. Please pace yourself when reading the report. We are happy to receive feedback on the services good or bad. tinyurl.com/y3z3c4y9

MERUK explores a study into muscle weakness in severe ME/CFS which may be driven by dysfunction of the sodium-potassium pump in skeletal muscle cells. The paper presents the hypothesis of an electrophysiological model centred on ion imbalance as a unifying mechanism. tinyurl.com/yc2m8rke

OMF briefly explains importance of calculating significance with proper statistical methods in ME/CFS research. The more tests you run on data, the more you can introduce bias, so calculating significance in ME/CFS research is less straightforward than other research areas www.omf.ngo/significant/

On International Women’s Day yesterday MERUK highlighted impact of gender inequality & discrimination based on sex on women's healthcare generally & for women with ME/CFS-both healthcare & research. More research is needed on impact of hormones & reproductive events on ME/CFS sx tinyurl.com/4fv97ha9

Credu Carers are hosting a session on Postural Tachycardia Syndrome (PoTS), both in Aberystwyth and virtually. All invited on Fri 20 March 10am - 1pm. Speakers: Dr Lesley Kavi and Sian Griffiths from PoTS UK. Book free tickets in advance online. tinyurl.com/3dhs4dm7

Cort explores the IMPACC Study into Long COVID where the immune findings mirrored those in ME/CFS which suggest that the innate immune system (the main inflammation producer) is in overdrive trying to compensate for an underperforming adaptive immune system. tinyurl.com/3snu6zd7

Video talk from Lisbon conference: Paediatric ME/CFS & LC clinical care models and diagnostic gaps for younger populations, by Danilo Buonsenso [40 mins] +Transcript tinyurl.com/3jznmzu7

New official figures published alongside this week’s spring statement have again disproved claims that spending on “welfare” is “spiralling out of control”. tinyurl.com/5y37sy9d

The 2026 round of Movement for Good draws is underway. Nominate WAMES to win £1,000! The more nominations we get, the better our chance of winning. 1st draw: 23-27 Mar. Spread the word – ask friends, family and colleagues to nominate us - help WAMES win! Charity number 1144534 tinyurl.com/mrxmec9t

MERUK highlights Prof Jason's team's investigation into PEM. They believe there are distinct subtypes & it not only differs between individuals, but can fluctuate in duration & severity within same individual over time. This cd affect tx efficacy & have implications for research tinyurl.com/mtj42ft6

A symposium in Winchester called for the UK gov to fund & develop research into ME. Sam & Radha share their experiences of lives lost to ME. "We're at the cusp now and we need help from government, from other funders, to enable us to help so many people," Prof Ponting said. tinyurl.com/yyf9znje

The Welsh Gov is asking for your views on a new National Strategy for Unpaid Carers. The 8 priority areas include: access to services; Young carers; Financial hardship; Respite & breaks from carin Various versions of this document are available. Closing date: 13 April 2026 tinyurl.com/bdcsw68z

Video talk from Lisbon conference: Therapeutic management of ME/CFS and Long COVID, including off label treatments and clinical trials, by Susan Levine [16 mins] +Transcript [begins 6 mins] tinyurl.com/2jrmda56

Wheels for Wellbeing are encouraging people to get involved in the UK Gov's Mobility aids consultation as they believe it has a number of problems. Read their resources The closing date is 22 Apr. tinyurl.com/s4nke56v

Online event: Clinicians discuss key characteristics and pathophysiology of post-exertional malaise (PEM) part 1. Wed 11 Mar. 4pm UK time. Register in advance tinyurl.com/zntwjhyr

Savannah has been moved to the Royal Devon and Exeter hospital and has been promised a consultant appointment. Donations have nearly reached £19,000 and if not all needed will be shared with 3 other severely affected people with ME struggling to get care. tinyurl.com/k8zhhy9p

MERUK explores a German study which inv which dx have been given b4 one of ME/CFS, in young ppl <27. Frequently dx conds inc fatigue, depression, pain disorders & MUS Also, those with a record of ‘post-COVID-19 condition’ had highest chance of going on to receive an ‘ME/CFS’ dx tinyurl.com/2x66tnuj

Universal credit (UC) sanction numbers have hit record highs since Labour took power, the latest figures released by the DWP reveal. 90% of all sanctions are for failure to attend or participate in a mandatory interview and a further 5% are for failing to be available for work tinyurl.com/2d29yc4z

OT Abby explains that “Yr baseline is level of activity yr body can reliably tolerate & recover from without worsening sx. Not heroic push. Not “good day” surge. Not adrenaline-fueled exception u pay 4 later" [NB Abby is private OT works in private sector but writes free blogs. tinyurl.com/32fwsfwz

Dewis Cymru - a wellbeing directory giving information and advice about people & services in your area about issues that concern you i.e. health, where you live, how safe and secure you feel, getting out and about, and keeping in touch with family and friends. www.dewis.wales

Video from Lisbon conference: Epidemiology of ME/CFS & Long COVID by Nuna Sepulveda [32 mins] +Transcript tinyurl.com/2hb4db7b

Melanie Kasner OT talks about Occupational therapy practice in the context of post-exertional malaise (aimed at OTs) [1h50] starts 4 mins "A client who returns to work is not a success story. Success with PEM management is the decrease of PEM". tinyurl.com/4csttxct

MERUK highlights the closure of long COVID clinics in England and the experience of a former GP: “I struggle to have a conversation. I’ve lost my thinking ability and short-term memory.” The mother-of-two...now had to manage her energy each day just to do basic tasks. tinyurl.com/2u4vrbjw

Pregnancy and Parenting with ME FB group: provides support to people with Myalgic Encephalomyelitis who are parents or are considering becoming a parent. tinyurl.com/5kkjf9mu

Infoengine is the online directory of third sector services in Wales, listing a wide variety of voluntary and community services that provide information and support. en.infoengine.cymru

Forward ME invites people to a talk by Tahlia Ruschioni from the Bateman Horne Centre on the BHC clinical guide, which they believe offers an actionable roadmap for care. Thurs March 5th. AGM 1415. Talk 1500. Register in advance on Zoom tinyurl.com/2zu67mb5

A major UK study has found that remote and hybrid working arrangements are having overwhelmingly positive effects on the health, wellbeing and job retention of Disabled workers — but warns that falling numbers of remote job adverts risk undermining this progress. tinyurl.com/2v4d9ush

It is easy to be traumatised by the suffering of Savannah, Maeve etc. Dan Wyke suggests some simple actions to keep hope alive: donate to research & crowdfunding; follow & share allies on social media; write to yr MS; reach out; share medical info. tinyurl.com/yckyrrcp

Women’s Health Wales Coalition launches its 2026–2030 Manifesto: Focusing on 51% who make up over half of Wales. They call on next WG to take bold action to improve their health. Manifesto is available English: WHW-Coalition-Manifesto-FINAL-2026-ENG-1.pdf Welsh: WHW-Coalition-Manifesto-FINAL-CY.pdf

OMF's StudyME update: there are over 15,000 people registered, representing 85 countries around the world. StudyME has helped recruit for over 20 studies of varying types—spanning in-person and hybrid trials, remote and online studies, and biobanks and registries. tinyurl.com/24tbxuu5

Share & learn is a series of online activities for carers. March activities: Intro to Mindfulness Course (4th); Pilates (4th); Self Advocacy (10th); Return to Work (11th); Support neurodivergent kids (17th); Zumba (20th); Be Active & Resilient (25th); Anticipatory Grief (26th) tinyurl.com/2c4cunec

MERUK's Feb research e-newsletter is now online www.meresearch.org.uk/me-research-...

Useful tips on how to write and pitch op-eds or stories on Long COVID (or ME) for media outlets, in order to raise awareness of illness. Editors of The Sick Times discuss their practices & give suggestions for sharing with broader audiences. [1h11] +Transcript tinyurl.com/d5xhpj98

Me Time is a series of online activities for carers in Wales. March's activities include: Understanding Anticipatory Grief (3rd); Workplace champion information session (18th); Seals who visit the Welsh coastline (24th); Carers rights (25th) tinyurl.com/53pxfnv2

Whitney says: Getting worse sucks. You can quote me on that. 😊 I keep making plans based on my current health & then my health.....changes & chaos ensues when I can’t meet commitments I’ve made... Right now I’m just going to batten down hatches & weather storm & hope for best. " tinyurl.com/y38764nh

A major overhaul of how the Warm Home Discount (WHD) is funded is prompting concern among disability organisations. DPCG has written to the energy minister warning that the change could lead to some Disabled people facing even higher energy bills, contrary to UK Gov claims. tinyurl.com/3rbc7pxs

Cort explores OMF's 1000-person BioQuest study which aims to "find, document & validate biol subsets in ME/CFS”. He talks to OMF's Danielle Meadows PhD abt study & how they r looking 4 “a biochemical signature for ME/CFS that can be conveniently evaluated through a blood test" tinyurl.com/42y76ey7